Pain burden in desmoid tumor patients: a survey of the French Advocacy Group SOS Desmoid

Philippe Rigaux; Danièle Lefebvre-Kuntz; Nicolas Penel; “SOS Desmoïde”

doi:10.1016/j.bulcan.2015.02.001

Pain burden in desmoid tumor patients: a survey of the French Advocacy Group SOS Desmoid

Bull Cancer. 2015 Mar;102(3):213-6. doi: 10.1016/j.bulcan.2015.02.001. Epub 2015 Mar 3.

Authors

Philippe Rigaux¹, Danièle Lefebvre-Kuntz², Nicolas Penel³; “SOS Desmoïde”

Affiliations

¹ SOS Desmoïde, 45, rue René-La-Combe, 49100 Angers, France.
² Centre Oscar Lambret, Pain Clinic and Anesthesiology Department, 59020 Lille, France.
³ SOS Desmoïde, 45, rue René-La-Combe, 49100 Angers, France; Centre Oscar Lambret, General Oncology Department, 59020 Lille, France. Electronic address: n-penel@o-lambret.fr.

PMID: 25747890
DOI: 10.1016/j.bulcan.2015.02.001

Abstract

Introduction: The French Patient Advocacy Group SOS Desmoid conducted a survey to measure the pain burden of desmoid tumor patients.

Material and methods: We used a structured questionnaire to measure the occurrence and consequences of pain.

Results: The pain occurrence was approximately 63%. In one-third of the cases, the pain was permanent. This pain led to severe social and economic consequences.

Discussion: The occurrence of pain and its consequences are underestimated among these patients. Pain needs to be closely and precisely measured and monitored in future clinical trials to assess the efficacy of proposed treatments better.

Keywords: Aggressive fibromatosis; Burden; Desmoid tumor; Douleurs; Fardeau; Fibromatose aggressive; Pain; Tumeur desmoïde.

MeSH terms

Adolescent
Adult
Aged
Aged, 80 and over
Analgesics / therapeutic use
Fibromatosis, Aggressive / complications*
Fibromatosis, Aggressive / epidemiology
France / epidemiology
Health Surveys
Humans
Male
Middle Aged
Pain / drug therapy
Pain / epidemiology*
Pain Measurement
Self-Help Groups*
Young Adult

Substances

Analgesics